Roy Mugera (31) from Dagenham, England believed for years that his back pain was due to hard work in a pubwhere he carried crates of supplies and occasionally changed beer barrels. For pain relief was taking over-the-counter paracetamol. Finally, the diagnosis came, which shocked even the doctors. The young man was diagnosed synovial sarcoma of the kidney – an extremely rare type of cancer that affects only 79 people a year in England, writes .
Rory’s problems began in late 2022, when he was in so much pain that he couldn’t sleep. He also noticed a suspicious lump on the left side of his abdomen that was moving up and down and the pain was getting worse. He repeatedly visited the doctor and was also in the hospital, but there was no clear answer.
After experiencing severe pain and vomiting during the massage, he ended up in the emergency room where he was scanned. Only further examinations at local hospitals and a biopsy revealed the true cause – a rare synovial sarcoma. After announcing the diagnosis, the doctors told him that the disease is incurable, but it can be managed.
Chemotherapy was extremely difficult. Roy overcame two life-threatening bouts of sepsis and underwent microablation lung surgery as the cancer had spread to his right lung. After stopping the treatment, his condition worsened and he started radiotherapy in March 2024which reduced the tumor from 21 cm to one centimeter. However, the excitement did not last long – the tumor grew again to 19 cm and metastases appeared in both lungs.
The young man admits that the information about the extreme rarity of his disease isolated him even more. “I was scared. I didn’t know who to confide in, who could tell me more,” he says. He was even helped by the Sarcoma UK charity, which connected him with people with the same diagnosis.
Today, he appeals to everyone not to underestimate the pain and at the same time points out that cancer is not always visible. The Sarcoma UK organization announced that it is funding two groundbreaking researches – targeted bacteriophage therapy at Imperial College London and oncofusion research at the University of Edinburgh. Experts believe that the results may change the way this disease and other types of cancer are treated in the future.
